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Fifteen-minute consultation: Empowering children, young people and families through shared decision-making: a practical guide
  1. Arvind Nagra1,
  2. Isabella Darshani Fuller2,
  3. Gary Connett3,
  4. Ben C Reynolds4,
  5. Kay Tyerman5,
  6. Dean Wallace6,
  7. Evgenia Preka7,
  8. Kirsten Armstrong8,
  9. Neeta Patel9,
  10. Sarah Shameti1,
  11. James Edelman10,
  12. Rosemary Dempsey11,
  13. Caroline Elizabeth Anderson12,13,
  14. Rodney Gilbert14,15,
  15. Mushfequr R Haq1,
  16. Matthew Harmer1,
  17. Yincent Tse16
  1. 1 Department of Nephro-Urology, Southampton Children's Hospital, Southampton, UK
  2. 2 Institute of Human Sciences, University of Oxford, Oxford, UK
  3. 3 Department of Paediatric Respiratory Medicine, University Hospitals Southampton, NHS Foundation Trust, Southampton, UK
  4. 4 Paediatric Renal Unit, Royal Hospital for Children, Glasgow, UK
  5. 5 Paediatric Nephrology, Leeds General Infirmary, Leeds, UK
  6. 6 Department of Paediatric Nephrology, Royal Manchester Children’s Hospital, Manchester, UK
  7. 7 Evelina London Children's Hospital, London, UK
  8. 8 University Hospital Southampton NHS Foundation Trust, Southampton, UK
  9. 9 Whittington Hospital, London, UK
  10. 10 Paediatric High Dependancy Unit, Southampton Children's Hospital, Southampton, UK
  11. 11 Department of Pharmacy, Southampton Children's Hospital, Southampton, UK
  12. 12 Dietetics, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  13. 13 Biomedical Research Unit, University of Southampton, Southampton, UK
  14. 14 Regional Paediatric Nephro-Urology Unit, Southampton Children’s Hospital, Tremona Road, Southampton and Faculty of Medicine, University of Southampton, Southampton, UK
  15. 15 Faculty of Medicine, University of Southampton, Southampton, UK
  16. 16 Department of Paediatric Nephrology, Great North Children's Hospital, Newcastle upon Tyne, UK
  1. Correspondence to Arvind Nagra, Department of Nephro-Urology, Southampton Children's Hospital, Southampton SO16 6YD, UK; arvind.nagra{at}uhs.nhs.uk

Abstract

Shared decision-making (SDM) is a collaborative approach to healthcare decision-making that involves patients and healthcare professionals working together to make decisions that are informed by the best available medical evidence, as well as the patient’s values, preferences and goals. The importance of SDM and the intricate interplay among parents, children and young people (CYP), and healthcare professionals are increasingly acknowledged as the crucial aspects of delivering high-quality paediatric care. While there is a substantial evidence base for SDM improving knowledge and reducing decisional conflict, the evidence for long-term measures such as improved health outcomes is limited and mainly inconclusive. To support healthcare teams in implementing SDM, the authors offer a practical guide to enhance decision-making processes and empower CYP and their families.

  • Paediatrics
  • Nephrology
  • Neonatology
  • Adolescent Health
  • Respiratory Medicine
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Background

Shared decision-making (SDM) is an essential, mandated part of healthcare. When done well, it can transform a patient’s experience.1 Research demonstrates that SDM can reduce decisional conflict and health inequalities, and improve patient knowledge and satisfaction (table 1).

Table 1

Potential benefits of practising shared decision-making

For children and young people (CYP), it is important to consider issues such as safeguarding, consent, and the role of parents or carers when including SDM within a care pathway. Developing autonomy is a key component of the transition process before transfer to adult services.

SDM is embedded in the National Health Service (NHS) constitution for England and key UK consultations such as ‘No decision about me without me’. National Institute for Health and Care Excellence (NICE) guidance has also been published.1 Globally, SDM has been promoted by many organisations including the American Academy of Pediatrics and the Australian Commission on Safety and Quality in Healthcare.

In the UK, legal considerations such as the Montgomery v Lanarkshire Health Board judgement and updated General Medical Council guidance have emphasised the need for paediatric healthcare teams to be skilled in practising SDM and to have access to suitable resources. Despite all of these initiatives, CYP and their parents/carers are still not always involved in healthcare decision-making. This article has drawn on 2021 NICE guidance, recent literature including systematic reviews and the authors’ experiences using specific tools, to close the gap between rhetoric and the implementation of SDM.1 The tools outlined in this article were largely developed by the Ready Steady Go (RSG)-TIER Collaborative. The authors of this paper actively contributed to the development of these tools as part of the Collaborative.

What is SDM and why it is important

SDM is a collaborative process involving healthcare professionals (HCPs), CYP and their families working together to make informed decisions based on the best available medical evidence considering individual values, preferences, goals and beliefs. Key to this approach is empowerment of CYP and their parents/carers to take an active role in their care. Figure 1 provides a framework for the key processes (produced by the RSG-TIER Collaborative).

Figure 1

An SDM pathway for all scenarios (produced by the Ready Steady Go (RSG)-TIER Collaborative). SDM, shared decision-making.

While there is a substantial evidence base for SDM improving knowledge and reducing decisional conflict, the evidence for long-term measures such as improved health outcomes is limited and inconclusive. This is because of the inherent challenges in designing robust SDM studies in CYP.2–4 Table 1 lists the aspects of SDM for which there is research evidence.

Consent and capacity

Consent and capacity refer to a person’s ability to make informed decisions. Parents have the authority to make medical decisions for their CYP, but as CYP develop greater levels of capacity, they should be increasingly involved. Increased levels of perceived autonomy are linked to higher health-related quality of life and lower rates of depression.5 For brevity and given the abundance of country-specific resources, we will not elaborate further on safeguarding or legal frameworks in this article.

Barriers and facilitators to SDM

There are no systematically collated data about the use of SDM in clinical practice and the extent to which they meet patients’ needs. HCPs are keen to be trained in SDM but ongoing support is required for successful implementation. In one Children and Adult’s Mental Health Services Project, HCPs reported progressing through stages of feeling apprehensive and feeling clunky before feeling confident to integrate SDM into daily practice.6 Just training healthcare staff in SDM may be insufficient. A study in a tertiary Canadian hospital found embedding requires a change in team culture.7

The results of a systematic review of barriers and facilitators to SDM in young people are shown in table 2.8

Table 2

Barriers and facilitators to successful delivery of shared decision-making (SDM) in paediatric practice (adapted from a systematic review)

The review highlighted how local practice should be tailored to the specific context, needs and preferences of CYP and their parents or carer. It also highlighted how building a team culture that encouraged CYP early in their patient journey to participate in SDM for low-risk decisions (eg, choice of plasters, which arm for blood taking, which medication to take first, etc) could build trust. The review emphasised how in making higher-risk decisions, healthcare teams might need to adjust their practice with longer appointments or greater continuity of care to create the optimal conditions for SDM.

This is particularly relevant to CYP in vulnerable groups such as those with a learning disability, mental health issues, low family education backgrounds, ethnic minorities, refugees, asylum seekers and those in local authority care. Such groups require a thoughtful and collaborative approach that takes into account their age, maturity and developmental level, as well as the perspectives of their parents or carers.3

Accessible health information is key to patient empowerment and SDM

In a systematic review, covering all clinical scenarios, patient information leaflets were shown to improve patients’ knowledge and satisfaction. For acute conditions in the short term, they improved adherence to treatment. For chronic diseases, invasive procedures or screening situations, their impact was more nuanced and depended on context.9 To be effective, health information needed to be accessible and understandable. 43% of adults in England have literacy levels below equivalent age 7–9 years old.10 Adults below this level may not be able to describe a child’s symptoms or read a label on a medicine bottle. Many NHS websites require an average reading age of approximately 16 years to understand content. Up to 61% of UK adults have reading difficulties when numeracy skills are also required. Similar rates of poor health literacy are found globally.

Research can help improve health information. For example, CYP and parents/carers demonstrate better understanding when natural frequencies are used compared with probabilities (ie, 5 out of 1000 people undergoing the operation will have a complication vs 0.5% of a population). The brain has been estimated to process visual information many times faster than text. Using more visual aids can result in better long-term retention of information.11 Videos and animation are increasingly inexpensive to create, popular among young people, and may benefit those with low literacy or where there are language barriers, although evidence for their effectiveness is lacking.12

The emerging ability for families to view their own electronic medical records through patient portals may in the future help SDM. Outwith the concerns of safeguarding and increases in patient confusion and anxiety, nascent research in adults has shown that patients have positive and empowering experiences.13

Co-producing resources with patients and families is important

Co-production of healthcare resources involves a collaborative approach where HCPs and patients work together to design, develop and implement healthcare resources such as services, tools and interventions. CYP’s, parents’ and carers’ experiences and expertise should be incorporated into the design of decision-making tools, ensuring that resources are tailored to meet their needs and preferences.

This approach can transform healthcare resources from something done to patients to something done with patients. Co-production should include patient involvement throughout the development process. Ultimately, co-production should improve the overall quality of information and thus better empower patients to take an active role.

Guidance to signpost CYP and families to the right health information on the internet is important. A systematic review of studies evaluating quality of health information on the internet found 55% of reviewed articles had quality concerns such as being incorrect, incomplete, basic, superficial or not useful.14 A similar systematic review has found healthcare information on YouTube, the second largest internet search engine, to be unreliable.15

National best practice guidance for creating high-quality health content is available with co-production being a key principle.1 Many hospitals, professional bodies and patient charities have signed up with organisations to accredit their processes as meeting necessary standards for the production of healthcare information (eg, Patient Information Forum in the UK; www.pifonline.org.uk).

Delivering SDM using Ask 3 Questions

Balance of power and time pressures concerning healthcare staff, CYP and their families can inhibit open dialogue for effective SDM. Adolescents attending with their parents rarely contribute to more than 10% of clinic dialogue.16 A useful, inexpensive tool developed for many conditions is a question prompt list. A multicentre randomised control trial in teenagers instructed on using question prompt lists attending an asthma clinic doubled the number of attendees asking questions about medication from 21% to 40%.17 This in turn significantly increased the interaction from HCPs with more health education in the intervention group.

Many versions of question prompt lists have been studied. Of these, Ask 3 Questions is simple and has been promoted in a campaign by the UK Health Foundation as it is universally applicable to any patient groups (figure 2).

Figure 2

Ask 3 Questions—a question prompt list to encourage patients to participate in shared decision-making.

The three questions are:

  1. What are my choices?

  2. What is good and bad about each choice?

  3. How do I get support to help me make a decision that is right for me?

Encouraging CYP and their parents or carers to ask these three questions enhances the quality of the information provided by HCPs about treatment options and their associated risks and benefits.

Documenting SDM

Documenting agreed decisions in a letter addressed to the patient should clearly include the chosen option, any follow-up care, monitoring and evaluation plans, and a summary of the decision-making process. It is important to provide a copy of this letter to the patient to refer to. For young people, the letter is best written directly to them with copies to parents or carers and the wider healthcare team.

Record-keeping needs to include the options discussed, resources (eg, clinical guidelines, decision aids, patient education materials) and the outcome measures used. The ‘Making a decision together’ record of discussion, for example, for dialysis (figure 3), is an example of an SDM record of discussion. This documentation can serve as a reference for future discussions and as auditable evidence of SDM.

Figure 3

An example of SDM with CYP and families across a healthcare team—dialysis choices (produced by the Ready Steady Go (RSG)-TIER Collaborative (kidney)). CYP, children and young people; SDM, shared decision-making.

Measuring the effectiveness of SDM

Measuring patient satisfaction and engagement enables healthcare teams to better understand how well they are communicating information and involving patients in decisions. Several validated tools (eg, OPTION scale, SDM Q9,18 CollaboRATE and Decisional Regret Scale) are available to help teams improve their discussions and resources. We have found the SDM Q9+1 figure 4 the simplest and responsive (box 1).

Figure 4

SDM Q9 + 1, a tool to measure patient satisfaction and engagement with shared decisionmaking. (Produced by The Ready Steady Go-TIER Collaborative)

Box 1

SDM Q9+1: development and use

  • The Ready Steady Go-TIER Collaborative working with the Foundation for People with Learning Disabilities, CYP, parents/carers and HCPs including those in training adapted the SDM Q9 to increase access across patient groups. An additional question was included (referred to as +1) that was designed to provide feedback on the usefulness of the information provided. Furthermore, a free-text section was provided for any further comments.

  • It is recommended that a patient and parent should both complete the SDM Q9+1 independently if both have been involved in the decision-making.

  • The SDM Q9+1 tool is not limited to specific age groups or medical decisions. It can be used for all SDM choices, allowing for benchmarking and the comparison of decision-making processes. This feature makes the tool versatile and applicable to a range of healthcare settings.

  • SDM Q9+1 has been approved for use by NHS England. It is available in a digital format with unique codes linking it to a pathway and hospital.

CYP, children and young people; HCPs, healthcare professionals; NHS, National Health Service; SDM, shared decision-making.

An example of SDM resource, pathway and record of discussion across a healthcare team

In 2021, a UK-wide multidisciplinary team (MDT) which included CYP and parents/carers came together to co-produce a specialty-specific resource developed using the RSG-SDM framework to help families decide the best kidney dialysis options (figure 3).

This included an easy-to-use visual grid outlining each dialysis therapy option, highlighting the pros and cons of each option for patients and their families to make an informed decision with HCP guidance. Families wanted to engage with other media so it was later digitalised to include patient, parent/carer and HCP videos on the www.ReadySteadyGo.net website to enable wider access and to address common concerns and questions.

Recording the decision-making in the ‘Making a decision together: Dialysis choices record of discussion’ ensured transparency and good record-keeping. Standardising the process, information and outcome measures can help MDTs work together, enable benchmarking and further improvements in healthcare. The UK Kidney Association’s involvement in this co-produced initiative highlights the potential for this resource to be adapted to fit different demographics and healthcare needs.

Conclusion

SDM is an important element of modern paediatric care. There are now well-developed frameworks and tools that can be used by healthcare teams to improve decision-making with CYP and their families. Simple tools such as Ask 3 Questions offer a structure, within which to base conversations, and are applicable to most clinical scenarios. Common, or complex, decision-making can be facilitated through readily modifiable decision grids. Evaluation tools can be used to further improve SDM within healthcare teams. Implementing SDM requires culture change and resources (box 2). NICE guidelines set out high-level leadership, creation of champions and an improvement plan as the foundation to embedding SDM across an organisation.

Box 2

Shared decision-making: useful resources

National Institute for Health and Care Excellence guidance

Personalised Care Institute

Examples of shared decision-making tools:

Ethics statements

Patient consent for publication

Ethics approval

Not applicable.

Acknowledgments

We acknowledge the significant contribution of the Ready Steady Go-TIER Collaborative (kidney). We thank all the patients and carers for their contribution to the dialysis choices pathway. We thank Christine Burke and the Foundation for People with Learning Disabilities. We thank University Hospital Southampton NHS Foundation Trust for their on-going support of the development and implementation of shared decision making and their financial help to enable open access to this article.

References

Footnotes

  • X @arvnagra, @garyconnett, @jamesedelman, @YincentTse

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests All authors are part of the Ready Steady Go-TIER Collaborative. Information about the Collaborative can be found at www.readysteadygo.net.

  • Provenance and peer review Commissioned; externally peer reviewed.